12 Things About People With Chronic Conditions You May Not Know

by Daniella Koren, May 25, 2012, 5:49 AM

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For years, many myths about chronic patient care and communications have hobbled our ability to offer the optimum supportive information. Through years of work with leading healthcare companies, I have identified some truths about patients and caregivers that may surprise you.

1. People suffering from a chronic condition want to see pictures of real people, no hair and all. Photographs of happy people walking dogs makes them feel even more misunderstood.

2. The color pink is not always welcomed by breast cancer patients. The pink ribbon overload is causing skepticism about whether companies are actually supporting breast cancer research, or just trying to promote their product.

3. White coat syndrome – fear of doctors and medical procedures – is real. Patients forget what they were prepared to ask, and are often unable to articulate their symptoms, downplaying them for fear of a negative diagnosis.

4. Patient educators are advised to keep reading levels low (4th – 6th grade). However, cancer patients expect a higher standard at the 12th grade reading level. The more serious the disease, the greater the need to participate in one’s treatment decisions.

5. Not everyone wants to meet, talk to and bond with others living with a similar disease. These patients feel that their disease doesn’t define who they are.

6. People with cancer are more selective about joining relationship marketing programs than patients with other chronic conditions. However, after joining, cancer patients are twice as engaged.

7. Up to 54% of people fail to take their medications as prescribed, according to the National Council on Patient Information and Education’s 2009 survey.

8. For a condition like diabetes that requires self-injection and monthly doctor office visits, the average time spent annually is 0.07% with the doctor, and 99.93% of the time spent self managing.

9. Caregivers of those with chronic conditions are key to successful treatment; however, they often underestimate how important core values continue to be to their loved ones (e.g., autonomy, control, family, safety). 

10. Use lifestyle tips with caution. Some people with chronic diseases are wary of nutrition and fitness articles/videos because they're afraid of being told that they caused their disease with unhealthy lifestyle choices.

11. Many people with chronic diseases are reluctant to ask friends and family members for help. They worry that they've asked so many times before that their loved ones may be suffering from compassion fatigue.

12. Doctors underestimate what patients understand. For example, patients particularly like to read about clinical trials and look at a treatment’s mechanism of action, items that doctors thought they would be least likely to understand. 

Key Takeaways for Marketers:

• Test visuals and messaging with your target audience before launch. Patients with chronic conditions are more than happy to volunteer for research if it means helping the community become more educated about the disease.
• One size doesn’t fit all. What works for one group of patients isn’t necessarily so with others. Never assume that the competitors have gotten it “right.” Instead do what is right for the patients you are informing, and fulfill their needs as specifically as possible.
• Don’t forget about educating the caregiver – they are key to making treatment and lifestyle decisions with and on behalf of the patient. Perhaps providing more ways to connect and talk honestly with the patients they are caring for will facilitate optimal relationships and choices.
• Keep doctors in the loop. If they understand what patients and caregivers are seeing out there, they will be more supportive and receptive to the questions being asked.
• Remember nurses and integrate them into your plan. In typical visits, they spend more time with patients than doctors do, and patients may be more comfortable discussing some topics with them. Think about how to encourage this dialogue and strengthen the relationship between nurses and patients.

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